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Despite misgivings about costs and the potential for abuse by persistent parents, members of the Senate Business and Labor Committee approved a bill 5-2 Thursday that would mandate insurance coverage of autism testing and treatment.
Sponsor Sen. Brian Shiozawa, R-Cottonwood Heights, who is a doctor, argued therapy for children with autism is effective and can be provided in a way that is fiscally responsible.
"This is one of the most significant bills that you will face in this session," he told the committee. "It is an opportunity for us to make great medical changes in people's lives."
Several parents urged the committee to approve SB55, which covers children through age 17, with a benefit of $50,000 a year for those through age 8 and $25,000 for older children. Advocates cited a study of mandates passed in five states that showed the average premium increase was 31 cents per member per month.
"Thirty-one cents per member per month is not going to break your business," Shiozawa said.
But insurance industry representatives questioned the costs and called the bill premature, saying the state should await the outcome of three treatment pilot projects approved in lieu of a mandate last year.
The fiscal note for SB55, made public Thursday, said it would cost $1.3 million in 2014 and $1.85 million in 2015 to add the coverage to various programs that cover state employees, public education and the Children's Health Insurance Program (CHIP).
By comparison, the three pilots cost about $12 million a year in state and federal funds to cover about 300 children.
Insurance agent Richard Herd pointed out that under the Affordable Care Act, Utah would have to have to pay the autism-related portion of premiums for residents who get federal subsidies to buy insurance. That expense was not included in the fiscal note. "I'm not sure how you'll defray those costs," he said.
And state mandates only cover insurers regulated by the state, about a third of the population, noted lobbyist Kelly Atkinson.
Marla Wayman, a free market advocate from American Fork, also spoke against the bill.
"At the risk of being called mean, this bill is not really directly about the care for autistic children," Wayman said. "It is about the control of private-sector insurance."
The effectiveness of the Applied Behavior Analysis treatment covered by the bill has been proven, Shiozawa and others said. Paul Carbone, a University of Utah pediatrician who treats children with autism, said one study of children treated with ABA showed it "actually changed the patterns of their brain waves when they were looking at faces ... to a more typically developing pattern."
Starting treatment at a young age is always better, Carbone said. Pressed by Sen. Todd Weiler, R-Woods Cross, he said he did not agree evidence doesn't support treatment for older children.
Senators questioned whether parents could continue to pursue treatment even if their children did not appear to be responding.
Coverage would be limited by usual rules that require a treatment to be medically necessary, and doctors would be the gatekeepers, said Lorri Unumb, vice president of state government affairs for Autism Speaks.
That was a sticking point for Weiler, who voted in support of the bill to allow further discussion but cautioned, "I don't think this bill is ready to pass."
There must be a clear "out" for insurers when a child is not responding, he said, because "motivated parents" could persuade a doctor to keep recommending care.
He also suggested trimming coverage for children who are approaching 12, noting treatment has a "short window of opportunity" to be most effective with younger children, "and I'd rather that money be spent there."
Sen. Diedre Henderson, R-Spanish Fork and Sen. David Hinkins, R-Orangeville, voted against the measure.
Before the vote, Weiler defended the three treatment pilot projects approved by the Legislature last year. A mandate was not going to pass, he said, and "we passed the only thing we could to get a foot in the door."
He continued, "All I've heard from the autism community since then is criticism of the pilot program."
He added, "And I would hope that if we get some form of mandate passed this session, that's not the reaction we get from this community. We're up here, we're doing the best we can, we're imperfect. But we did something phenomenal last year and I'm just tired of being criticized for it."
Outside the hearing, House Speaker Becky Lockhart, R-Provo, said, "We're pretty committed to seeing [the pilots] go forward ... to seeing how that plays out over two years."
While crediting the Legislature for acting last year, Shiozawa predicted the results of the pilot will show the therapy works.
"All we will have done … is to deny this therapy in this critical time for a very vulnerable portion of our population," he said. "This is the time to act."
Cari Brown said her 3-year-old son, Craig, was accepted into a pilot and has been receiving ABA therapy 24 hours a week. His progress has been "nothing short of phenomenal," she said, but she worries about what will happen when the pilot ends.
"An insurance mandate would eliminate these concerns," she said.
18,532 balls to represent autistic children
A display of 18,532 balls, representing the number of Utah children with autism, will be installed at the Utah Capitol Rotunda Friday from 10:30 to 11:30 a.m. The Utah Autism Coalition is creating the ball pit using a giant container built by Home Depot and plastic balls from Toys R Us. The group will also distribute jars with 639 gumballs to each state senator and 247 balls to each representative, representing the average number of autistic children in their districts.